![Craniectomy: Life on Hold](https://www.brainline.org/sites/default/files/styles/full_view_image/public/migrated/Bob%20and%20Lesli%202.jpg?itok=NSGs6eUO)
After my husband, Hugh, was struck by a car while riding his bike home from a workout, doctors rushed him to the nearest trauma center and operated on his brain. The next day, because he responded to family voices, my daughters and I believed he was on the road to recovery.
Less than 48 hours later, Hugh was rushed back into emergency surgery when he developed a right subdural hematoma. This time, doctors performed a craniectomy; they removed a portion of Hugh’s skull to relieve brain swelling. This operation reduces damage to healthy areas of the brain by allowing the brain to swell without being squeezed; it can prevent death and improve outcomes. That piece of bone — about the size of half a grapefruit — was put in the hospital freezer. I was told it would not be replaced for at least three months, the time it would take for Hugh’s brain swelling to recede.
These three months were the longest three months of my life. In the acute brain rehab center, I was told that Hugh should wear a helmet on his head every time he stood up so he would not reinjure his brain. To compound my worries, Hugh felt dizzy, he was wobbly and often tripped when he walked, and he was cognitively impaired. As I waited for him to be “put back together,” I felt as if our life was on hold.
After three months, Hugh’s bone was replaced without incident; and within two weeks, he regained the use of his left side, his dizziness abated, and his balance stabilized. Somehow, having that piece of bone back in his head restored his equilibrium.
I recently talked to a man who went through a similar experience, but he had complications. Bob Gray was a Chief with the Arlington County Fire Department when the 9-11 attacks occurred. He’s known for leading his department’s Technical Rescue Team in its search for survivors at the Pentagon. After 30 years in the department, Bob retired in January 2011. Two months later, he had a freak accident. He sustained a TBI at home when he fell from a ladder.
During surgery, Bob also had a craniectomy, only his surgical site became infected several times. He had to have repeated operations to clean the area. Over the next two and a half years, he spent a lot of time on antibiotics. During his final bone flap surgery, Bob was in the hospital for more than a week. Doctors discovered that the infection had affected both his scalp and part of his skull. When they tested the bone, they found MRSA, a drug-resistant infection, in the bone piece, which could have been deadly. Now Bob lives with a prosthetic bone completing his skull.
Now that the surgery is over and he has finished his last dose of antibiotics, Bob is hoping he will continue to heal with no further setbacks. “This whole process has felt like one step forward and ten steps back,” he says.
Bob’s wife Lesli tells the same version of Bob’s story, but she includes many references to her own personal stress. Like me, she was told Bob should wear a helmet, and, like Hugh, Bob did not like wearing the helmet. The more mobile Bob became, the more worried Lesli grew. With each new surgery, Lesli felt like this would never end. She said, “We were all okay with the idea of a new normal, but it started to feel like even that was not a realistic goal.” Hopefully, Bob’s prosthetic bone has resolved the problems related to his infections.
Today, Bob is back to dedicating his time to Project Rebirth, an organization dedicated to facilitating healing, fostering hope, and building resilience among first responders, veterans, and other community leaders. He’s glad to be back to his active lifestyle. Lesli says that she’s okay with how he’s doing, but she feels anxious when he is doing anything (like cycling) where he might fall. “I am hoping that more time will reduce the Nervous Nellie in me!” she says.
There are two similarities worth noting in our stories: both Hugh and Bob felt more incapacitated when part of their skull was taken out (dizzy, out of balance); and both Lesli and I experienced a lasting sense of anxiousness. My anxiousness has lessened with the passage of time, and I hope hers will, too.
I’m also hoping that through our stories others may feel more prepared if a loved one should have to undergo this procedure and may not be alarmed if they experience similar setbacks until the bone is replaced. I’m grateful that Hugh had a craniectomy. It’s a life-saving procedure for sure.
Comments (127)
Please remember, we are not able to give medical or legal advice. If you have medical concerns, please consult your doctor. All posted comments are the views and opinions of the poster only.
Anonymous replied on Permalink
Wondering if anyone has had a scenario like mine and can shed any light on my future cranioplasty surgery.
I had a decompressive Craniectomy in December 2023, removed my right bone flap due to pressure in the brain caused by cerebral Venous sinus thrombosis (blood clot) which in turn created a severe haemorrhage.
Now in March 2024 all is well minus still wearing the helmet and blood clot is still present in the brain. I was initially told maybe 6 months before consideration for cranioplasty however still no mention of any plans from my consultant and worrying how long I will be waiting.
As of now the suspected cause of my cerebral venous sinus thrombosis is my overactive thyriod and which at time of admission I was in a state of thyrotoxicosis.
Would love to hear from anyone with a story like mine.
Pramod replied on Permalink
Hi..
Good morning
I hope you and your family is doing well,
my brother got TBI in 03.02.2023 and his bone flap was removed to allow space for swelling.on 21th march 2023 he got cranioplasty with autologous bone flap which was stored in freezer.But on 28th march he got SDH and after cleaning the blood same bone flap put back.On 14 th april again his bone flap was removed due to infection and after three month same bone flap was using in craniplasty but again after two month his bone again gets infected.
my younger brother having cranioplasty with autologous bone flap on 18th july 2023 but after two months the bone gets infected.Now Dr. said that this time he will use PMMA implant or Titanium mesh implant.
Can you please share your experience after titanium implant cranioplasty and which is better in both.
please guide me for best prosthetic bone at this maoil.
amu.pk.1@gmail.com
Anonymous replied on Permalink
I also have craniectomy surgery before three months doctor said we reattached the bone flap that was stored in cold place but after 3 months doctor take my CT scan and then i don't know but they don't reattached my bone flap they said bone flap naturally grown in 4 to 5 years this incident happened in 2022 March then my age is 17 can anyone explain me is really my missing bone flap regrown again after 4 years after craniectomy my head is looking to much bad without bone flap but slowly slowly the dig on my head filling I hope my bone flap also regrown another wise my operation happen after 2 years again to reattached my bone flap sorry for my bad English
Pramod replied on Permalink
Hi..
Good morning
I hope you and your family is doing well,
my brother got TBI in 03.02.2023 and his bone flap was removed to allow space for swelling.on 21th march 2023 he got cranioplasty with autologous bone flap which was stored in freezer.But on 28th march he got SDH and after cleaning the blood same bone flap put back.On 14 th april again his bone flap was removed due to infection and after three month same bone flap was using in craniplasty but again after two month his bone again gets infected.
my younger brother having cranioplasty with autologous bone flap on 18th july 2023 but after two months the bone gets infected.Now Dr. said that this time he will use PMMA implant or Titanium mesh implant.
Can you please share your experience after titanium implant cranioplasty and which is better in both.
please guide me for best prosthetic bone at this maoil.
amu.pk.1@gmail.com
Anonymous replied on Permalink
My dad had a bad fall 25 days back and had a decompressive craniectomy done , and he is still unconscious after 25days with eye opening and no body movements . When will he gain back his consciousness ?
Anonymous replied on Permalink
I have such mixed feelings about finding this site. My 33 year old son is 5 months craniectomy for a massive left hemisphere stroke caused by traumatic carotid artery dissection. His Cranioplasty was done 2.5 months ago using a PEEK implant and everything was going great until about 2 months later when his healed incision began to ooze thin yellow fluid. They opened part of the incision and cleaned out some areas, replaced some of the titanium plates and washed it all out with antibiotic irrigation. The cultures came back positive for Pseudomonas infection and he has been on IV antibiotics for 3 weeks. Unfortunately the drainage continues and he will need his implant removed next week. I am dreading the next few months and fear that he will require multiple surgeries. He has made such great strides in his recovery. So far he does not have MRSA and he feels great but a body can only take so much. I also worry about the skin flap. This will be the 4th time that incision is opened and the temporalis muscle dissected away from the bone. A second Cranioplasty holds an even higher risk of infection.
Worried Mom whose life is on hold too.
Pramod replied on Permalink
Hi..
Good morning
I hope you and your family is doing well,
my brother got TBI in 03.02.2023 and his bone flap was removed to allow space for swelling.on 21th march 2023 he got cranioplasty with autologous bone flap which was stored in freezer.But on 28th march he got SDH and after cleaning the blood same bone flap put back.On 14 th april again his bone flap was removed due to infection and after three month same bone flap was using in craniplasty but again after two month his bone again gets infected.
my younger brother having cranioplasty with autologous bone flap on 18th july 2023 but after two months the bone gets infected.Now Dr. said that this time he will use PMMA implant or Titanium mesh implant.
Can you please share your experience after titanium implant cranioplasty and which is better in both.
please guide me for best prosthetic bone at this maoil.
amu.pk.1@gmail.com
Someone who cares replied on Permalink
Have faith, and know that things will work out I have a nephew that is going through the same thing. He was in a bad motor cycle accident. Half his skull has been removed.
We would love to control what happens to our loved ones but unfortunately we can't. So, all we can do it have faith and be there to support. I'm sure the love, support and the care that they feel when we are beside them will help them become stronger and give them the strength that we know that they have inside.
We can only do what we can to support and allow life to take it's course.
Take care a hold tight, know that you are loved and have support from those you may never know.
Anonymous replied on Permalink
I've recently suffered a right sided hematoma,had a large portion of my skull cut away doctors clipped the aamuerism I've done a course if physio because it affected my left side,my balance is slowly getting better,my life is in hold I've bit been out or seen my friends since it happened because I didn't want to go out with a helmet on,in such if waiting to have cranioplasty I just want to be able to see my friends again and get a bit if normality back and gi back to work and have a beer with my friends in 42 and feel like I'm missing out on so much it's hard to stay positive I do it for my mum she looked after me so much
Stephanie replied on Permalink
Hello,
October 2021 I had a stroke a week after having my daughter. Had a craniotomy on the right side. When I woke up after 10 days of surgery I was in a induced coma .i Could not move my left side of body. 3 months later. I’m able to move and hold my newborn daughter. Currently waiting for my cranioplasty. Bone flap was put in my stomach. Got some sucky news that my skin flap has shrunk and now my neurosurgeon wants to insert a balloon to stretch my skin for three months. And later put my bone in. I’m so scared of infection. I’m suppose to get married this year. But everything is canceled now. I’ve been crying due to him saying I need a balloon it sounds so scary. I’m 30 years old. 3 kids.
Anyone can message me email me
Steffnygc@yahoo.com
Anonymous replied on Permalink
Hello,
Thank you for this post.
I suffered a ruptured neurocytoma brain tumor and had to have a craniectomy.
I then had a brain infection with another operation and piccline for treatments.
After 3 months I had a cranioplasty.
My question is - does your husband sleep on the side where the cranioplasty was done? Does it ever bother him where the incision is? Does it feel bumpy and off level?
I am 26, been living after these surgeries since I was 25. May 13, 2020 bt survivor. June 01, 2020 brain infection survivor. And now I’m just trying to discover what the correct way to sleep at night is.
Thanks,
Rose M
Patience love replied on Permalink
Hi rose me and you both have very similar stories. I had brain surgery in 2021 march. And another for brain infection may 2021 and now I’m just waiting for my next surger To have a plate put were the skull is missing. Do you have any tips to share that could prepare me
Anonymeows replied on Permalink
Hello Rose, I'd like to give you a little background on myself first. I suffered an ICH in June, 2021 and hence had to undergo a right decompressive craniectomy. For the 2½ months I lived without the fraction of my skull, I was strictly asked to sleep on the left side alone. It was a struggle considering how I'm the type of person who cannot sleep without moving around. After I got the Cranioplasty done I was advised not to sleep on my right operated side for atleast 2 months and was asked to try and avoid sleeping on the right side as much as possible and to only take quick relief naps for around 2 minutes on that side in case I really can't manage sleeping only on my left. Now in April, 6 months after undergoing Cranioplasty I find myself sleeping on the right side more often than I was advised to. I'm conscious of it though and try to shift back to the left whenever I realize I've been on the right for too long. It doesn't hurt sleeping on the operated side, just feels a tad bit strange and ofcourse the bone feels off level around the incision and I can feel the titanium screws over my skin. I use my hair to cover the area of incision as if parted looks very pink and one can tell I've had something done there and being a female I can't help feel a little conscious, but I can't complain as I'm blessed with this second chance at life. I hope this helps you. Wishing you the very best in life! Take care :)
Regards,
Beni M
Anonymous replied on Permalink
gm/hp fri ..always grateful 4 people shrin stories..im 51--.nov 2020 i went in 4 surgery to fix a thoraic aorta aneurysm. their was complications, while shaving the aneurysm down a blood clot floated up my spine and got lodged in bk of my skull, causing a cerebellar stroke,
(no major deficits) an emergency crainiectomy was performed, bone flap was not replaced, in feb 2021 a vp programable shunt had to be put in for proper cf (cerebrospinal fluid) drainage because a small pouch w/fluid in bk of head formed. the programable shunt had to be adjusted a few times for pressure.. sometime in june/july it was completely turned off, shunt is still in my head..iv'e come a long way, but still a bit off with balance, especially when bending over.I still feel i hv some more healing ahead of me. 1 day at a time.. thx for everyones time.. extremely grateful to be here.
Anonymous replied on Permalink
Hi There,
I was just doing some research and I am so happy I found this page. My husband had a bypass recently for moyamoya disease and ended up having a complication the next morning. The dr had to perform a life saving craniotomy. Unlike your the gentleman in this story the dr threw away my husband’s skull bone. The dr. Is taking about placing a custom PEEK implant. Will the PEEK implant or any other prosthetic give my husband the perfect head? Does this gentleman have a perfect head? Your reply would be greatly appreciated.
Casey replied on Permalink
My mother had an aneurysm 6 years ago, they inserted a plate on her right side and she was left paralysed on the left. In January of this year we discovered she had a bine infection on the right side and they needed to remove the plate and bone. Today she had a craneictomy and they removed slot of bone on her right side leaving her nearly with half a flat head. Originally they said eventually they would do a second surgery to put in an artificial bone/plate but have now said it would be too much of a risk to operate again and it will stay as it is with nothing there. Does anyone have any experience with this sort of thing? How is day to day with nothing but skin protecting the brain? Did you wear a helmet all the time? Side effects? I would appreciate any help.
Stanley little replied on Permalink
I got shot in the head and have been living with my entire right side of my skull gone my balance is garbage and im sure many other thing that i have forgoten about.. i had 4 boneflap surgeries all was unsucessful so i just gave up
Renee replied on Permalink
I have had two failed Cranioplasty surgeries.... I have given up too. My skin flap is a mess, and I am done shaving my head and having it cracked open.
Sharon replied on Permalink
Hi, my son(49) was shot in the head while on a blind date and her ex came into his house and then killed her.
He is really wanting his bone flap back and surgery is scheduled for middle of May and he’s adamant about finding a new surgeon to do it sooner. Any advice to give him please
MA replied on Permalink
I will pray for you.
Jay replied on Permalink
My son-in-law had a brain tumor removed in October of 2019. In December, he had a seizure and they found that he had an infection that impacted the surgical sight including the bone. Remarkably, they did not throw away the bone but must have been able to clear it of any infection. It stayed frozen for two years and he just had it put back yesterday. His head looks amazing. If he didn't have an incision, you'd never notice that he'd had a huge crater in his head - 10cm - for two full years. In Canada, they do not use helmets. In fact his doctor, one of Canada's preeminent neurosurgeons, thought it was funny that his MIL who is a nurse asked about it. So for two years, he had to be super careful not to bonk his head. Just in case everyone is wondering, the two years of waiting was due to Covid and the socialized medicine situation where even putting a skull back together is not considered a priority. We're just happy, he finally got his head back together and will soon be able to enjoy a normal life again.
Simone replied on Permalink
I hope this worked out I’m sorry nobody had an answer for you originally
Rusa replied on Permalink
Hi Casey , How is your mother now .
If she is paralysed then she might not move much and so to be without the bone wont be an issue . But operating again may increase the risk . As soon as the bone is joined back again to the skull , it starts creating some kind of pressure again and may result in hemorrhages.
Anonymous replied on Permalink
My Father had his first severe brain stroke( left brain haemorrhage) on 11th August 2019 , We immediately rushed to the hospital , and he was put in ventilator . Then after 10 hours or so the doctors performed craniectomy . We were informed that it will be very difficult for him to survive after the surgery . After 14 days of surgery my father opened his eyes from coma. It was a new ray of hope for us .
after 25 days of stay in hospital he was discharged with his bone flap preserved in hospital .
His right body and limbs were completely paralysed , his speech was lost and the head did not had any balance . The tracheostomy tube was still inserted and the feeding was done through Ryles tube . It was hard to believe that this man was my father . He was almost like a lifeless body . All he knew was to cry and cry loud .
On November 23, 2019 my father again had the Cranioplasty (joining back the bone flap) . Then gradually he started gaining some balance on his head . He could swallow his own saliva , some liquid food . We thought that one day he will be back in his old form .
Then on the night of 9th January 2020 , he again had brain haemorrhage now on the right side of the brain . This caused his left body to get paralysed . We again rushed to the hospital . The doctors suggested another round of craniectomy . But this time his survival chances were even more less . He stopped responding and sometime and the doctors said that he has attained brain death . But his heart was still working as he was on ventilator . On 11th January ,2020 at 11.30 am his heart stopped due to cardiac arrest .
My father is no more . He is gone . Gone too far , with all his pain left behind .
Craniectomy can not always save the life . It can just delay the death .
Anonymous replied on Permalink
My mother went with craniectomy on 16th Dec 2019. Now she is unable to talk (speech is unclear), Right hand not at all responding, right leg partial response, walking in supporting mode. Could u say that, when do she get clear speech, right hand and leg? Pls answer anyone.
Sandi replied on Permalink
Same thing happened to me I was in a coma for three months they did a craniotomy and I woke up thinking the right side of my body was paralyzed three years of therapy physical therapy speech therapy I can walk but not too far so I’m in a wheelchair but I can walk with a walker don’t give up on her it’s worth it I am 3% that survived the accident I was in and it can happen
Kim replied on Permalink
My daughter has been in a coma for 3 months now. She has a grade DAI 3. Severe car accident. Do you have A TBI
Anonymous replied on Permalink
I’ve just had a craniectomy (due to a mass growing inside the bone) and it was replaced with titanium mesh.
I’m doing remarkably well- No infection and no bad things happening like i was warned. There is obvious pain and it was very strong for the first 2-3 days but it is easing now some. Only complications I had was with my breathing but that was due to issues with my asthma and the anasthesia, not the actual surgery causing issues itself.
I feel very tired and although I’m not having any major issues with stoke like symptoms from swelling and all, doctor has still put me in a walker for my recovery as I already have some balance issues and I can’t afford to fall and injure myself while I’m healing. They’ve also given me a raised toilet and are doing in home therapy- something I didn’t expect since it’s not a surgery for Mobility. My fingers are a little bit fumbly but nothing serious. I couldn’t use the left side of my face for app 3 days but that’s improving now as swelling is going down. Doctor said that’s common and normal for many people.
I’ve been very encouraged with how things are progressing! I think it’s super important to 1) get a great doctor (mine is famous in the field and was thankfully within my insurance program. Not only is he an active surgeon but he’s also the department head of neurosciences and the lead researcher for the Brain rumors and treatment lab at Emory university in Atlanta). 2) be so careful about infection! My doctor gave me extremely strict orders about how to prepare for the surgery and how to love afterwards. It seemed excessive but I don’t even have irritation at my wound site and now signs of infection at all, despite the fact that I have 3 immune diseases that severely compromise my ability to fight things off. I’m thankful he went the extra mile with prevention of infection.
I was wondering how long it takes most people to recover their sense of feeling around the incision. With a past surgery I had with a lot of cutting, it took a while but started to come back a little at least pretty quickly. But so far I haven’t recovered any sensation yet around where they cut. So was wondering go about that tbh.
Hope everyone progresses well with their surgeries and recoveries!
Pramod replied on Permalink
Hi..
Good morning
I hope you and your family is doing well,
my brother got TBI in 03.02.2023 and his bone flap was removed to allow space for swelling.on 21th march 2023 he got cranioplasty with autologous bone flap which was stored in freezer.But on 28th march he got SDH and after cleaning the blood same bone flap put back.On 14 th april again his bone flap was removed due to infection and after three month same bone flap was using in craniplasty but again after two month his bone again gets infected.
my younger brother having cranioplasty with autologous bone flap on 18th july 2023 but after two months the bone gets infected.Now Dr. said that this time he will use PMMA implant or Titanium mesh implant.
Can you please share your experience after titanium implant cranioplasty and which is better in both.
please guide me for best prosthetic bone at this maoil.
amu.pk.1@gmail.com
Anonymous replied on Permalink
I had part of my brain flap removed because it was infected. The doctor said he didn't know if he would put it back. He said it could cause a lot memory loss. The spot close to the temple and down close to my ear. What do u think I should do?
Michelle Walker replied on Permalink
I had the exact same thing at the exact same place. Right Temporal lobe.
Anonymous replied on Permalink
Hello. My daughter had a major stroke 10 years ago. She was doing fine with her flap replacement. But 10 years later the body has a sorted the brain flap. She goes in to.orrkw to remove any fragments and the plates that are poking through her skin. They say 3 months and she will get her new brain flap fabricated by them. My question is how long is the hospital stay after this? And the side they are operating is completely dead anyways due to the stroke. I am wondering about complications? .
Mab replied on Permalink
My father is home now after having his right skull removed due to a subdural hematoma cause by passing out in the bathroom. Does anyone have advice on how to get him to wear his helmet at all times when out of the bed? He has great long term memory but his short term is affected as well as reasoning and overall cognitive ability... I just get really nervous when he goes to the bathroom cause he tends to take it off if he thinks no one is watching. He has refused to shower but that makes me even more nervous because I don’t know how to ensure he keeps the helmet on until he washes his head. Any advice would be awesome
Teresa Storey replied on Permalink
My husband fell in October and he acted the exact same way. Would not wear the helmet, his long term memory is excellent and short term memory is bad. To get him to wear his helmet, we would take walks only at night and i would have to keep explaining to him that if he falls he could die so he had to wear it. We have young children so he would finally listen. He had his skull put back on almost 2 weeks ago. His voice even changed back to normal after. Dr said he's a miracle. Hang in there, I know how frustrating it is, but it does get better. Also, he used the walker for about a week only, his balance came back pretty quick, but still worried me. Good luck to you and your family.
Michelle Walker replied on Permalink
This explains exactly how 2018 was for me. I had a craniotomy apriil 26, and emergency Craniectomy due to staph May 30 & Cranioplasty Sept 17th. From May til September, I was missing part of my skull... afraid of falling, etc. Now I live with constant headaches when lying down due to pressure I suppose on the prosthetic bone in my head. I woke up early and was angry at the pain so I started googling and found this. Thank you! I know I am not alone.
Elisa replied on Permalink
Did anyone suffer from personality changes ,short term memory loss or slight abnormal behavior after craniectomy ? If yes, then how did it take to fully recovered from that? Plz give me answer of this.. A very close friend of mine has gone through surgery 3 months back.. Now he can walk , eat and talk..but behaviour is very weird. I m very tense
Anonymous replied on Permalink
My husband had a craniotomy a little over a year ago. He had a miraculous recovery and is doing well. However, I am curious and ask if either of you have experienced indentations in your skulls? My husband has different areas in his skull where indentations seem to come and go around the surgery site. Your response would be welcomed.
Linda Pedersen replied on Permalink
I also have quite a deformity (sunken) where the titanium mesh plate has been inserted. Fortunately, my hair covers the area. I saw a show on tv about someone having fat inserted to "round) it out. I don't want any more procedures and
I'm ok with the way it looks.
Anonymous replied on Permalink
I am so happy to find this !
Wish this surgery on nobody.
Had mine on July , 25 2019 and have had PCM twice now .
Post craniotomy meningitis.
I have yet to be able to get off of the steroids and not have another flareup I am praying that after next week this does not return. I need to get back to work my life and my family. My life has definitely been on hold which is so foreign to me and many others who know me. Thank you all for sharing your stories and your experience and this article. Because I am so desperate right now to feel better it’s ridiculous. I had a lime sized brain tumor removed on July 25.
Anonymous replied on Permalink
Hi! I have had 5 surgeries 1. craniectomy to treat a subdural Hem. following a fall on the sidewalk. The bone was removed then replaced. This happened out of my country, so we had to fly home. It became infected. Had to have it removed as I had developed meningitis, the bone was very bad and was discarded. All the stitches were blown open and liquid was oozing from the site. There was even necrosis of the dura, so a plastic surg. procedure was done to cover my brain. I was on a pic line to receive Vancomycin for 6 weeks. After 4 mos. I had an acrylic plate put in and all seemed great. Another infection appeared about 14 mos. later. I felt very discouraged at needing to go through it all again: remove plate, pic line, wait 5 mos to have the titainium plate inserted. It has been 9 months, but I don't feel secure. I have headaches, anxiety attacks, sometimes pressure in my head. I am due to have a ct scan and see the Dr. Feb. 26, so, I am hoping all is well. I am constantly thinking about the various sensations( pain-pressure, etc) Very discouraging.
Anonymous replied on Permalink
I have the same feeling after my infection any pain headache throbbing thinking infection coming back..
Happyplace replied on Permalink
Hello!
We had our surgery on the same day ! I had PCM TWICE and there will be better times ahead . It SUCKED ASS and I wanted to scream in frustration but was in so much misery could not . I am so sorry you are dealing with this . I am now back to work week 3 and doing many things I did before, but not all . I do not look or feel the same. The steroids changed my weight and I look pregnant :/ BUT I am alive and so are you ! I hope when you read this you are feeling better !!!! Hugs enclosed your tumor buddy :)
Annette replied on Permalink
I also had craniotomy last july, the 30th to repair a brain leak. So frustrating, feeling physically great, but still having issues on my head so i decided to look on the internet for support regarding my scalp. Now 6 1/2 weeks, i am walking two miles every other night after dark with hubby, in cali right now its way too hot out to walk during the day. When i sweat i need to get in the shower and gently wash my hair for fear of infection. My incision area vibrates, itches, feels stiff like if it had glue on it and my husband checked it for me, he said its really thick and lifting, and when i touch it i can feel the stitches that were supposed to disolve. I guess some of them are lifting out with the scab or something. I was given very little information on surgery site care, i dont know if I should put something on it. Its super thick and hard. Again, it feels like its vibrating sometimes. How is yours?
Sabina replied on Permalink
Hi everyone, I'm after a bit of advice please. Following a few weeks of 'unusual' behaviour my mum had a fall. To date we are unsure whether the fall caused the haemorrhagic stroke or whether she was suffering a minor bleed which culminated into her falling over. She had burr hole surgery and things looked to improve over 24-36 hours but then her brain swelled so much she suffered another stroke for which she underwent emergency craniectomy. It's coming up to 2 years now that the bone flap has been removed and we are still awaiting a date for the procedure. She desperately wants to have it done but I'm so concerned hearing all the risks and my mum is rather a complex patient (atrial fibrillation -and on warfarin, has a metal heart valve, suffers with heart failure, has scleroderma - plus a whole other list of health complications). I just sometimes think that its too risky to have the operation as she manages to get by as she is - although I have noticed some deterioration in her overall mental health during her recovery and it appears that could be improved by having a titanium plate put in. What I really want help with is my mum is desperate to go abroad (12 hour flight) to visit her relatives, but I'm not sure how comfortable the journey would be for her (given cabin pressure etc) does anyone have any experiences they can please share with me regarding how air travel has been for them. Is it even advisable to travel with just the bone flap? I'd really appreciate any insight.
Shiela replied on Permalink
Hi i am a craniotomy aurvivor for 3 years.. my feeling was ok.. i did not undergone for titanum mesh i was scared then maybe i cannot survive.. but just now i accidentally hit the glass door and i feel dizzy.. i am qorriwd of my self since i am working her in abroad as a domeatic helper and currently on vacation her in lebanon.. do i have ro worey then aftee hit in the door??please anyone expwrience please share..
Thank you
Shiela
Tony Brown replied on Permalink
My best friend Suzette has been going through hell over the last 2 years. At 37 she had a brain aneurysm and is just had her 3rd titanium plate removed because her body once again had rejected it. She has been diagnosed with MRSA also so her options for antibiotics are limited which makes it seem next to impossible to stop any infection she may acquire. Today she is recovering from her last plate removal surgery with what seems like no hope in site for her. Its so very hard to watch someone be treated like a guinea pig. From the beginning to now she has had 19 surgeries which include multiple shunt surgeries....things seem so hopeless. After the first plate replacement surgery she literally got out of bed 3 days later and walked down the hospital corridor, not she needs help to sit up and basically move. Suzette is absolutely exhausted and has become trapped in her body....its heartbreaking to watch. Is there anything else that can be done other that trying the same thing over and over?
Also, I have been hearing that CBD oil can increase brain function and help with aneurysm and stroke victims? Any truth?
I should mention that Suzette had suffered a stroke during her coil surgery to stop the bleeding causing her to have limited function on her left arm and leg. Therapy had helped her in the past gain back her leg and arm functions but now it seems that because of all her complications she is slipping backwards and losing those abilities quickly with every failed surgery.
Any suggestions or comments would be greatly appreciated...
Anonymous replied on Permalink
I do not think cbd can hurt there are cannabinoids naturally in the brain. I don’t know that it will help. I take it to calm down my restlessness. It has not helped any stroke symptoms but definitely helps with ADHD!
Carolyn Kruger replied on Permalink
CBD oil works but medical marijuana oil works even better. I have been using a small amount...about a quarter of a teaspoon two or three times a day. I am very pleased with the results. Mild mood elevation, pain relief are almost immediately felt. This has improved my life considerably. I no longer use Fentanyl patches..which I had used for twelve years. Good luck to your friend. She is very fortunate to have your help.
Vanessa replied on Permalink
Hi
I am going through a similar thing with my Dad :( he had almost half his skull (right side) removed last May (2018) after being assaulted and hitting the ground. He has had 2 cranioplastys to replace the skull with a titanium plate but both got infected and had to be removed. We have now been told we have to wait a full 12 months for them to even consider operating again. He pretty much regains full movement in his left arm and leg when the plate is in but when he is without one his mobility declines rapidly. I'm so worried he is going to decline so much in the next year that it will be impossible for him to regain his mobility again. This is so hard and I feel for everyone experiencing what we, our family and friends are.
Suzy replied on Permalink
My heart goes out to you and Suzette. I don't have any answers... but I can share that you're not alone. We've watched our daughter suffer for the last 4 years with multiple brain surgeries, etc from being thrown from a turning golf cart. Some of her situation is similar to Suzette's - somewhere around 19 surgeries ( we lost count, most were brain surgeries), shunts, right side paralysis and now contracted legs, both paralyzed, speech and comprehension difficulties, inability to get up, ... I've heard that progress is best in the first year or two, but after that it's more difficult. In our situation, we continue on a slow, downward spiral. Be sure to find something in life to help you smile... You need respite for the long term haul. Hugs.
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